My first time here. Looking for advice from all partners to MS patients. Decided to post because of the difficulties I am having in supporting my boyfriend’s recent (1-month-old) MS diagnosis.
We have very different communication styles to begin with but these have been worse with the recent news. He (M, 32) deals with difficult moments and traumas by repressing his feelings and avoiding discussing/thinking about them. His mother died ten years ago and he dealt with it by pushing away all thoughts of her and never talking about her again. It seems he has the same reaction now - and he says that since stress makes MS worse, he’s medically justified to repress all conversations about it. He’s only interested in hearing medical advice on the topic. 'If you come to me with new information I’ll listen", he says, but all I hear is “since you’re not a doctor, get out of my face”.
I (F, 27), on the other hand, need to talk about difficult things and express myself to feel better. I also feel like he is not taking into consideration that the diagnosis affects me too, that it will shape the rest of my life with him now.
I love him so very very much, I want to spend my life with him and we are planning to get engaged, but seeing how this breaks down our communication really makes me fear that we will grow apart down the line if we can’t fully support each other. I’m here for him no matter how the MS develops but I am worried about the impact that this illness will have on the relationship dynamics.
So how have all you in relationships worked on your relationship after an MS diagnosis? How did you get your spouses to open up about it? Did your partner - maybe especially male partner - react similarly and how did you deal with it? What tools have you used to communicate better/grow stronger as a couple? Have you, for example, set a specific slot in the week when there is a sort of free zone to talk about it and how you’re feeling?
So many questions! Thank you so so much in advance for any advice you can offer! He means everything to me and I’m desperate to make this work
Hi, I have SPMS, diagnosed last year but had MS for over 20 years.
My husband sounds alot like your partner in the way he deals with things. He wants to deal with things as they happen, and doesn’t want to know what may happen in the future.
I can’t change the way he is, I just have to accept it. But it is frustrating especially when I sometimes I feel as though he thinks all is well.
I can’t offer any solutions but I hope you work it out
Best thing is to listen for his cues that help you understand how he wants to play it, and follow his lead as much as you can. Never mind if it’s not your preferred style of dealing with difficult issues; you will need your own confidential friends to off-load to, most likely, but that’s a separate issue. I really would strongly advise letting him do it his way and falling in with that, even if it isn’t how you would do it or even if you think it would be better for him to do it some other way. A supportive partner is a great blessing.
Sometimes silence is a blessing and really helpful. It gives you space and time to think. Your partner copes by nottalking about things and in these early days (in my book) that’s ok. 1 month is a tiny length of time for an MS diagnosis.
If you need to talk - which you do- speak to us in the forums. When your partner is ready he will gradually open up to you.
He sounds like my partner. His father died when he was a teenager and it took years for him to tell me about him.
My partner has MS and was diagnosed 3 years ago, but it turns out he has had PPMS for over 30 years. He still walks and talks and laughs. Sometimes. He still has his bladder function. We still have a physical relationship. His main problems are cognitive and have been over the 30 years looking back. That has been the major issue. Mood swings, not talking, irrational behaviour. He’s still a good dad to our adult children and a cheerful grandad. He’s not one for counselling- tried it twice and it didn’t work. He’s also not keen on medication. He’s on ocrevus at present but nothing else.
Over the 30 years I’ve kept myself sane by looking after the kids, doing my job and sharing our joint responsibilities, and seeing my friends and family. He’s not always distant and we have real moments of connection. See if your partner opens up in due course. Reassure him that you are there to listen if and when he wants, but if he just wants to do and talk about non MS stuff, enjoy those good non MS times. There will be plenty of time to discuss MS later.
However,…You are starting your lives together and MS is a real biggie. There are lots of “what ifs”. You feel a real pressure to talk about it now and I can understand that. I don’t think you should embark on married or partnered life without those chats. Maybe just give it a while longer? Think about your important issues and how MS might affect them. Everyone’s MS is different so there are a range of possibilities for what might happen. Talk about it and see if you can reach agreement on the way forward once he is ready.
There are a couple of things that jump out at me from your account.
Firstly, it’s only been a month. I had my diagnosis 8 months ago after misdiagnosis for nearly 10 years. It takes some getting one’s head around and takes some time to assimilate it. It will take months and a month is too soon for him to have a treatment plan, medication, full confirmation. Give him time to come to terms with it and put together his own strategy. He sounds like he needs to internalise things first.
Secondly, you have some compatibility issues. Sorry if that’s too direct. You’re a talker and he isn’t. Let him come to terms with it in his own way, but if his solution is to lash out at the world and those closest to him in particular, you do need to decide if you are right for each other. Not now - he needs time to adjust. Actually, YOU need time too, as this is life changing for you as well.
My husband was diagnosed shortly after we returned from honeymoon. He deals with things in the same way as your partner. This is his journey and I think in the early days you need to let him deal with things I his own way for at least the first few months. Lean on friends and chat in these forums in the meantime. I have found that naturally my husband is beginning to open up. Use those as opportunities to speak. Make sure your partner knows that this involves you too. It is so difficult staying strong for both of you. You need to let him know that you love him and are there to support him but also make sure that he knows you need to talk too. Communication is key. Sometimes talking too much can make things worse too. I’m a talker and need to talk things through but living in the moment and remaining positive for the future will ultimately help both of your wellbeing rather than focusing on the what ifs. As long as you have each other, you can get through anything.
i have RRMS since 2008 (diagnosed, but started 2006-2007). In those 13 odd years, its only been the last 2-3 years that it starting to hit me. Mourning things i use to do, trying to push myself but not working. I have bottled up for the first 10 odd years. Having MS is a big hit to the system mentally. Im a bugger for not talking about how it’s affecting me. In a way its like talking about what you are mentally going through, is making it real. Typing this is difficult, as it is making my ‘Can’ts’ into reality. Which is good as i need to come to terms with my ‘Can’ts’. Sorry i’m talking about myself, but hopefully it’s a bit of a understanding how your partner could be feeling. Stay strong, it is a journey, a journey that your by his side. He will be needing it.
I was just curious how things were going for you and your partner? I have been dating a guy for 6 months now and really think he could be the one but just got diagnosed and now he goes days without talking to me and then is somewhat normal for a bit but bc of the diagnosis and the fact he is having problems “physically” he won’t let me come over to spend time with him and I am struggling quite a bit! I want to be there for him but he is so distant
It’s tough, being the partner of someone with MS or similar. My only suggestion would be to try to take your cues from him and fall in with that where you can. He might have a LOT of internal processing to do before he is prepared to open up to you or anyone else. Do not take this as a failure to communicate on his part (or yours); please be aware that it is perfectly normal. But also be aware that it is a great comfort to know that there is someone close to us who cares, so it’s probably worth the world to him that you’re there and you’re listening. Even if it doesn’t show right now.
Thank you very much it is nice to have somewhere to go to talk about this…I know I am not the one that is directly being hit by this big life changing event but being with someone who is it is also a challenge itself no one I talk to around me understands and I want to be with him….so knowing how to go about it and learn is a very comforting thing